Erika highlights the Enroll-HD study: A worldwide research study we can all participate in
HDYO has more information about HD available for young people, parents and professionals on our site:
16 April 2013
Many of you may know about an observational trial called ENROLL-HD - for those of you that don’t, it is a huge study done in 19 countries (14 different languages) at 240 medical centers. The coolest thing about the study: everyone who is at least 18 can participate!
Anyone with affiliation to HD has a place in this study. There is no need to get tested if you are still undecided or prefer not to know; your gene status will not be disclosed. The appointments are done annually and you will be providing useful information to researchers so that we can have better treatments and care for people with Huntington’s Disease.
Many of our stories are similar but they all seem to have a unique twist. My symptomatic father took his life when I was 11 years old. Realizing how precious family is, my sister and I became very close. Eight years later we found out that she has the gene expansion and I don’t. I never really felt guilty (as I know many people do); I knew there was nothing I could do about our gene status. When she started showing symptoms just a few short years later - 10 years earlier than expected - I knew there had to be something to make this seemingly helpless situation less scary and devastating. Taking action and learning as much as I can is how I cope with knowing my sister and so many amazing friends I have met will be affected by this disease.
I joined an observational trial just like ENROLL-HD, got involved with the local chapter and sought information about HD. Just shy of 9 years from when we found out our gene results I am a first year medical student/ aspiring neurologist, member of the Northwest Chapter Board of the Huntington’s Disease Society of America, a support group leader in Central Washington, and now serve on the ENROLL-HD care committee. My sister is participating in a clinical trial and her symptoms seem to be better. The knowledge I have gained and the people I have met who are working tirelessly to find more effective treatments give me hope. There is nothing that I want more than for my sister and other people dealing with this disease to have a better quality of life.
If you or a family member is struggling with HD please know you are not alone. Even though you may feel helpless there is always something that can be done. Get involved and find out how your talents can contribute to the HD community.